Resistance and Hope: Essays by Disabled People by Alice Wong

Author:Alice Wong
Language: eng
Format: epub
Tags: anthology, politics, disability, resistance, social justice, self care, activism, trump, disability rights, disability justice

Reflections as Congress Debates our Futures

Stacey Milbern

Content notes: caregiving, Medicaid cuts, suicide

This essay was written in the summer of 2017.

Found this photo tonight of Shu and I on graduation day. The photo evokes mixed feelings in me: appreciation for her and deep sadness that the Medicaid funded services that made this joy possible are under attack.

[Centered is Stacey, a mixed race Asian American person wearing a black graduation gown and cap. She is holding a yellow graduation stole. Shu, an Asian American woman with long hair, is to the right of Stacey. She is carefully adjusting Stacey's graduation cap. Stacey is looking forward smiling.]

Today my Facebook feed is full of disabled people saying that they will die if this legislation passes. It is not an exaggeration. My Medicaid funded attendants come every day to assist me to get out of bed, bathe, eat, and manage my impairment. For many of us, our lives depend on these attendant services. Medicaid is the only payer for them, and the services are already classified as optional for states. By capping/cutting federal Medicaid dollars, the new legislation pressures states to cut services, and the ones they can most easily cut are the optional services.

I read today that 88% of those receiving “optional” services are seniors and people with disabilities. More than half of the funding for this “optional” classification is for home and community based services, like the ones that make my life (and this day pictured) possible. It’s all as totally fucked as it sounds.

Last weekend a video producer followed me around to tell the story of these Medicaid cuts. Part of the reason my story is included is because the video producer thought it was compelling that Medicaid funded attendant services were what made it possible to come out as gay/queer. Before I had Medicaid funded services, my family provided all my support. My family is evangelical Christian and have a hard time with queerness. I love my family and miss them tremendously, and also needed space and attendant support to live my life as me, obviously.

The video producer and I went back-and-forth about how much footage to show. I want to maintain privacy around my personal care routine (emphasis on the word personal!). At the same time part of the problem is that these supports, whether provided by paid attendants or unpaid loved ones, are invisibilized. There are many reasons for this… I have heard Beltway friends imply that if unpaid caregivers tallied up their labor, organized, and started demanding government to pay for the supports disabled people and their families deserve, the system would not be able to continue as it is now. I also know personally that a function of ableism is that it forces disabled people to navigate systems in isolation, so most people do not actually have a clue about what our lives are like.

I want the video producer to be successful in his storytelling so we have another tool against these cuts. At the same time, it is hard to show any vulnerability in a society that discards people who it considers to be weak.

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